Support and Empower At-Home Caregivers of Patients With Cancer
Finding comfort among loved ones at home can be conducive to healing in all of its dimensions for patients with cancer. For patients in home care, many aspects of treatment and day-to-day medical care are done by loved ones or family members. In the United States, nearly 4.6 million at-home caregivers are tending to patients with cancer (https://ascopubs.org/doi/full/10.1200/JOP.2016.017913). Although many at-home caregivers embrace the responsibility, managing successful oncology care can be a complex burden for family members—many of whom are likely unprepared for the stressors of cancer care.
At-home caregivers provide a variety of support to patients: help with daily activities like showering and transportation, routine medical care like dressing changes or port flushes, social support and companionship during difficult periods, and advocacy during clinic visits and in communication with the healthcare team (https://ascopubs.org/doi/full/10.1200/JOP.2016.017913). At-home caregivers also face several challenges. They can experience emotional distress after a diagnosis—similar to a patient. They must often reduce their time at work to manage their new responsibilities, leading to stress about financial issues, lapses in insurance coverage, or even isolation when caring for their loved one (https://ascopubs.org/doi/full/10.1200/JOP.2016.017913). And it can be a full-time job: at-home caregivers spend an average of nearly 8.3 hours per day for a course of 13.7 months, according to one study (https://onlinelibrary.wiley.com/doi/full/10.1002/cncr.24588).
"Oncology nurses are keenly situated to empower at-home caregivers and encourage support at the institutional level."
Despite the challenges, many at-home caregivers fill their responsibilities and provide excellent care to their loved ones. To support their efforts, the healthcare team should consider caregivers as a vital extension. Through communication, collaboration, and supportive efforts, medical providers and at-home caregivers can work together to offer continuous, uninterrupted care for patients with cancer.
Through a four-part framework (https://ascopubs.org/doi/full/10.1200/JOP.2016.017913), oncology nurses, oncology nurse navigators, and other members of the care team can help support family caregivers as they work with their loved ones.
- Conduct a thorough assessment that correctly identifies the individual providing at-home care.
- Provide initial and ongoing education about the caregiver’s role.
- Empower them as part of the healthcare team to give them a voice and platform to advocate for their loved ones.
- Aid and support at-home caregivers when they’re unable to fulfill their responsibilities or when they need help managing decisions.
Oncology nurses are keenly situated to empower at-home caregivers and encourage support at the institutional level. As patient-centered leaders, nurses can spearhead the formation of a family caregiver advisory committee—similar to a patient advisory committee—to standardize support efforts and discuss strategies to aid home caregivers. As patient advocates, nurses can ensure that caregivers have a voice on the care team. Nurse are primed to lead and deliver a change in practice that includes supporting patients as well as the family members who care for them.